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CHfather

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CHfather last won the day on September 15

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About CHfather

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  1. CHfather

    Cluster Headache Awareness T Shirts

    I admit to being an overly large guy, but when I clicked on the size I intended to order, the price changed from $20 to $223! I'm sure it was supposed to be $23, but I was reluctant to proceed with my order. There is no place at the website to leave feedback, so maybe you can get this message to her.
  2. CHfather

    Toronto Cluster Advice

    If you are looking for these, you might start here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ The section called "'Treatments' without O2 or other meds" might be most relevant, but maybe parts of the rest of it will be helpful. Not sure what kind of advice you're looking for, but the general principles of "busting" with psilo or other substances are included at the end of that file I just linked you to (the same information appears if you click on the "New Users..." thing at the blue ribbon at the top of the page).
  3. CHfather

    I have migraines

    Several people here have reported that it is helpful for them. The vitamin D3 regimen has also shown considerable success for migraines. https://vitamindwiki.com/Cluster+headaches+substantially+reduced+by+10%2C000+IU+of+Vitamin+D+in+80+percent+of+people
  4. CHfather

    Shadows!

    Interesting. Thanks.
  5. CHfather

    LSD and pain management

    Interesting. Thank you! And any study that inclines toward greater acceptance of LSD as a therapeutic agent is to be celebrated.
  6. CHfather

    lightning-fast effect - but why and how?

    Back in 2016, a fellow wrote this: >>.I mix and chug down: 1 Teaspoon of baking soda 1 or 2Lime(s) (Preferably organic) 1 cup of filtered water (Don't use tap water) Not only I have been able to reduce the intensity of an attack, but I have been able to abort it. It's worked several times.<<
  7. CHfather

    Question about D3 + other

    Batch has written: "CH'ers who have used this regimen and experienced a significant reduction in the frequency and severity of their CH or gone pain free and then had this test have had an average 25(OH)D serum concentration of 81.4 ng/mL. (203.5 nmol/L), min = 34.0 ng/mL, max = 149.0 ng/mL."
  8. CHfather

    My sister, I"m helpless

    Here's an overview of CH treatments. It also has a link to the D3 regimen. https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ I'm not completely certain that what she has is CH, but you might as well try the recommended treatments and see what happens. Maybe it won't be too hard for her to get her hands on a cylinder of O2 with a non-rebreather mask and a regulator that goes up to at least 15 lpm? (She could try 12lpm if that's all that's available.) Thank you for being there for your sister!
  9. CHfather

    Waiting on my 2nd cycle

    I don't think they're "intractable" unless they fail to respond to all conventional treatments, and I'm pretty sure that's not the case. It's possible that you won't have another cycle for a long time, or at all. More likely that you will, of course. Quite possible that the various CGRP meds will be better developed for CH by the next time you have a cycle, or another effective treatment will have been discovered/approved, and it will turn out to be easier for you than it has been for all the previous generations of people with CH. For a general overview of ways to treat CH, you might want to look at this file: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ You'll probably forget most of what's in it, but if/when you do have another cycle, you'll know it's there. Asking myself if there's anything you should do now. I'd say to seriously consider starting some version of the vitamin D3 regimen (there's link in the post I linked you to above), so you are building up your D levels. As far as anyone knows, there aren't any bad side effects from following that regimen in a disciplined way. You don't say whether you received any prescriptions (maybe the diagnosis came after your cycle was over). You will read about triptans in the post above: they have their uses. Because the number of triptan devices (injectors or spray containers) that you can get at any time is limited, more than a few people fill their prescriptions for triptans when they are out of cycle so they have a "stockpile" when/if they need them. This is just something to consider. They're expensive. And you might never need them, or never really want to use them.
  10. CHfather

    Fall is coming

    igdc, this is a kind of guide to the treatment options we're most familiar with. Maybe you'd want to look it over, just for preparedness' sake: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ It doesn't address the new CGRP pharmaceuticals (Emgality, Aimovig, Ubrelvy, and others), which might be worth trying. And people are always mentioning new things that seem to have helped them. Do not underestimate the potential power of busting!!!!! It's discussed at the end of the post I just linked you to, and also under the blue "New Users..." banner at the top of each page.
  11. CHfather

    Diagnosis

    Thank you for this information.
  12. CHfather

    Nurtec medication?

    Thank you for keeping us informed. Hoping you'll have some good (or great) news.
  13. CHfather

    the joy of CH

    I hope you get some good help with getting O2. I would also check in at the Facebook group "Cluster Headache (trigeminal autonomic cephalagia)". A pretty strong international representation there. There's a link to D3 regimen basics in this post, which might also have some other ideas for you: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/
  14. CHfather

    Constantly drooping eye

    Myhed', you might want to look into the condition called Horner's syndrome, I think. People with CH can have it outside of their cycles. The main characteristics, as listed Mayo Clinic are droopy eyelid (ptosis), a persistently small pupil (miosis), slight elevation of the lower lid (sometimes called upside-down ptosis), sunken appearance to the eye, and little or no sweating (anhidrosis) either on the entire side of the face or an isolated patch of skin on the affected side. As I understand it, though, Horner's is rarely painful unless there's a more serious underlying condition. I think your symptoms probably are not a sign that your CH is returning (maybe others will correct me about that), but I think you should have them checked out by a doctor to rule out other causes. An opthalmologist, I would imagine.
  15. CHfather

    Paroxysmal Hemicrania -> Day 4

    Seigfried, I was just reading this for another reason, and saw this info about an apparent way of treating HC. Maybe it doesn't fit for PH, but I felt I should mention it. https://jmedicalcasereports.biomedcentral.com/articles/10.1186/s13256-019-1986-y ".... Patient 1, an 82-year-old Caucasian woman, presented with hemicrania continua with a partial Horner’s syndrome that was present for 2 years. She was unable to take indomethacin as she was on anticoagulation. After a C2–3 diagnostic facet injection, not only did she become pain free but her ptosis completely resolved. She then underwent a radiofrequency facet neurotomy with complete alleviation of head pain ...."
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